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Comment by Halfbakedwho on April 9, 2018 at 4:14am

Beez - I am doing the same thing - Clobetasol 2x day to at least slow it down. It feels a bit compulsive/impulsive -  a bit superstitious. Like knocking wood, like checking all the doors etc. 

It is so hard for me to tell if there's a difference since stopping minoxidil, aside from the disease progressing, obviously, but as you all know - it does what it wants no matter what I throw on my head. I  never noticed an initial shed with minoxidil, but I noticed it made me feel a bit weird (heart rate went up, etc.). 

If I could, I would go back to getting my hair all nicely blown out, with twice-yearly Brazilian hair straightening. I looked so chic, and not "sheep". ; ) But that wouldn't hide the loss, as the mass of curly hair does today...

Denial is kind of nice, but when you come back to reality - red inflamed spots on your scalp - a bit of a shock to the system. 

The birds are singing outside, and I have a morning to work on my paperwork and other things. There's that... : )

Comment by illustr8r on April 8, 2018 at 7:13pm

@Pfl I’m not taking any meds except for Clobetasol when I see red dots around my follicles in the front and sides. I too pondered Minoxidil but the initial shed scared me as what if what falls out doesn’t come back-or only does with continued use? My mindeset is of “do no harm” and wishful thinking! 

Comment by Plf on April 8, 2018 at 6:49pm

My dermatologist prescribed oral Minoxidil as well as spironolacts and dusteride..I have postponed commencing all meds as I had read about the initial side effects of shedding and I didn't want that to happen before my daughters wedding, ( which is this week) it actually was probably a good thing as it gave me time to think about if I wanted to take meds, yes as once you start you are on them forever!  So at this stage after reading everyone's posts I'm pretty sure I'm going down the same treatment pathway 'denial'...not at all brave.just hoping for a miracle

Comment by Beez on April 8, 2018 at 2:49pm

I started minoxidil to the crown  of my head last year and lo n behold, after about 4 months the handfuls of hair I lost every shampoo decreased, and also I saw some new growth and it was DARK hair, not gray! But..... it was very sparse, not really enough to make a difference. Then I developed a bad case of excema in the exact area so I stopped using it in November.

Everything was stable til the last few weeks when hair loss at shampoo started increasing again. So I don't know if it's just the natural and cruel waxing and waning of this horrible disease or did minoxidil really have anything to do with it??

halfbaked....I recently saw the dreaded follicular red bumps at the front of my hairline and have stepped up the clobetadol use to twice a day and I actually rub it in. The inflammation seems to have lessened a bit.

ughh...you're soooo  right guys, it's all about managing it yourself. 

Comment by Minter on April 8, 2018 at 9:23am

Haha yes, I am with the denial cure also! That is, as long as my powders and potions keep working!

I always wonder about minoxidil also, my doctor never mentioned it :-/  but will it work to thicken up what I've got and I read about the pre-shedding before it starts working, yikes! Plus, it would be something that I would need to use, for-ever, once started, ugh. So I guess there are pros and cons, just not brave enough to start with it yet I think- 

Comment by Halfbakedwho on April 8, 2018 at 3:41am

Question - do you feel that your minoxydil (spelling) makes a difference? My last Dr. took me off of it, saying it doesn’t. Of course we all know that practically nothing makes a difference, but, in at least our scalp-projective-fantasies of thicker hair, what do you see? Even if you feel it might just be a hallucination... or not. Depending upon where you’re at... 

Comment by Halfbakedwho on April 8, 2018 at 3:17am

Due to a lot of busyness, I haven’t been around. Welcome to everyone new, though it’s a bit of a painful welcome I’m sure. This morning I’m writing because I see there are many inflamed hair follicles right at my forehead, on top on the hairline. I assume that all that’s inflamed there is going to go- a decent sized patch. I admit that I forget to use the cortisone lotion and take my tetracycline, but (at the risk of repeating myself, and all of you...!) it doesn’t seem to change anything. But - I wonder if my first treatment with clobéstasal was better than this one...? That was only once a day. Now I’m on something different twice a day... I hate playing with my meds, but it seems to be our lot. Finagling this and that to see if anything at all makes a freakin difference... 

I think I have been so busy (a good thing) that I kind of got into a denial-mode, and maybe that’s why I haven’t been regular enough with my medicine. If I’m not thinking about it, if I don’t look at it, then maybe it’s just ... gone. Yay! The denial cure! Except those angry red dots don’t bode well. 

Obviously I’m going to pay more attention to taking my medicines. But no finasteride for me, no playing around with my immune system with anything stronger. I’m not risking my health for my hair. 

Bises to you from rainy France. 

Comment by Plf on April 7, 2018 at 6:40pm

Celcius

Comment by Plf on April 7, 2018 at 6:39pm

Thanks illustr8r, will give it a go, applied some " hopes relief" yesterday pm seems to have soothed the area a little...to bad no one has found the miracle solution yet, happy Sunday all, it's supposed to get to 31 degrees ceCelsi in Melbourne today, wierd for autumn.

Comment by illustr8r on April 7, 2018 at 2:52pm

@pfl Have you tried Cortisone 10 anti itch cream? I use that when I have weird outbreaks caused by god knows what. 

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